Does anyone know if this can come and go? I am going to a new clinic on Wed. and they called me to tell me I have to wait in the hallway when I go there because I cultured it back in 2003, but I guess only once more since then and all the rest have come back neg. for it. Its really concerning me =(
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B. Cepacia
- Thread starter AmyKins
- Start date
thelizardqueen
New member
What's the difference between waiting in the hallway and the waiting room? Why not just give you a mask or have you come on a different day then the regular CFers?
I've had b.cepacia for about 9 years now and my understanding of it is, it is pretty much permanent. BUT I have however heard of people erradicating it if it is caught in its early stages ( before it has permanently invaded the lungs). I do remember a few times giving a sputum sample and having it come back negative, and then a few days later it finally showed up in the sample. It takes longer for b.cepacia to show up in a sputum sample so if they arent leaving it sit long enough you may get a false negative. I am assuming thats why they ( at your new clinic) are cautious. They say if you have 3 consecutive cultures come back negative you are free of it , and i'd like to see that happen, but who knows........ I have heard of someone getting rid of it shortly after she got it and it never resurfaced ( not even 10 years later), so i know it IS possible to be gotten rid of, but it isnt common for that to happen. Look at it this way....be glad they want to keep you separate from everyone else, cepacia or not, you have no idea what the others have and are safer to have some distance between everyone.
My sister had a culture come back that she had b. cepacia, which was a couple of years ago now. That was the only culture that showed the cepacia. She has had it checked with her periodic sputum cultures and it hasn't shown up since. If I am remembering correctly, it now shows that she has gladioli (??). I know she asked the dr. about it, and I think he had said something about one of the bacteria taking over the other one. Don't quote me on that. I'll send her this link and maybe she will reply. I know that the clinic usually schedules her for the last appointment as well.
julie61554
Member
Allisa (my sister) sent me this topic to reply to.
My experience was that I cultured it twice I believe. When I cultured it, it took some time to show up and I was already on IV antibiotics. I also cultured pseudomonas at that time. Over the years, the pseudomonas is gone and now I culture burkholderia gladioli and staph only. I guess the gladioli won over the pseudomonas. The dr. said sometimes the bacteria can go through a "mutuation process" if I understood properly and that it could have been cepacia and mutated to gladioli. I never heard of that before but I am no dr. Anyway, I haven't cultured the cepacia for probably 3 years but I ALWAYS culture burkholderia gladioli. I have heard that a lot of times that the burkholderia gladioli is sometimes misdiagnosed as cepacia so it could be that is what happened in my case.
Anyway, they do still schedule me last in the cf clinic. I don't know if it is because of the cepacia or the gladioli. They have never told me I have to wait in the hall though. Our clinic usually gives out masks to all cf'rs to wear (although this last visit they didn't).
Julie
38, w/cf, burkholderia gladioli, staph
My experience was that I cultured it twice I believe. When I cultured it, it took some time to show up and I was already on IV antibiotics. I also cultured pseudomonas at that time. Over the years, the pseudomonas is gone and now I culture burkholderia gladioli and staph only. I guess the gladioli won over the pseudomonas. The dr. said sometimes the bacteria can go through a "mutuation process" if I understood properly and that it could have been cepacia and mutated to gladioli. I never heard of that before but I am no dr. Anyway, I haven't cultured the cepacia for probably 3 years but I ALWAYS culture burkholderia gladioli. I have heard that a lot of times that the burkholderia gladioli is sometimes misdiagnosed as cepacia so it could be that is what happened in my case.
Anyway, they do still schedule me last in the cf clinic. I don't know if it is because of the cepacia or the gladioli. They have never told me I have to wait in the hall though. Our clinic usually gives out masks to all cf'rs to wear (although this last visit they didn't).
Julie
38, w/cf, burkholderia gladioli, staph
I think my doc had told me the same thing- that the "bugs" can over take eachother. I am glad they are so cautious where I am going, but I so worried about if I have cepicia or not (because this is a transplant eval.)- My nurse told me my last 2 came back neg.- I am confused if I have it or not- I will clear it up tomorrow. Thanks for the help =)
yea I have heard that is true. I went to the transplant clinic today & I am clear of the cepicia, but also she did say they have done some transplants with cepicia because there are different types I guess- a "good" one and a "bad" one. I guess if its the "good" one they will do it. I was very worried about this but she said its not a problem for me.
Hi, Amy! Where are you being evaluated for tx?
Greg had cepacia type III (the 'bad' one). We were quite concerned they wouldn't tx him, then concerned he wouldn't make it until tx (the rules changed while he was on the list and he shot to the top), then concerned about all the bad statistics and additional risks being tx'd with cepacia. Email me anytime if you have any questions.
Just had his 8 month check up and his lungs are doing fabulous. (He is personally having some digestive issues between the cf, the tx meds and adhesions which make him prone to having obstructions). But we are so blessed.
We wish you the best! It is amazing to go from toting oxygen everywhere, and not being able to doing anything, to living a normal life. Good luck and take care.
jan (wife of Greg, 46 cf'er, cepacia pretx, tx'd 10-31-05 at Methodist, Indianapolis
www.standinginthegap4greg.org
standinginthegap4greg@hotmail.com
Greg had cepacia type III (the 'bad' one). We were quite concerned they wouldn't tx him, then concerned he wouldn't make it until tx (the rules changed while he was on the list and he shot to the top), then concerned about all the bad statistics and additional risks being tx'd with cepacia. Email me anytime if you have any questions.
Just had his 8 month check up and his lungs are doing fabulous. (He is personally having some digestive issues between the cf, the tx meds and adhesions which make him prone to having obstructions). But we are so blessed.
We wish you the best! It is amazing to go from toting oxygen everywhere, and not being able to doing anything, to living a normal life. Good luck and take care.
jan (wife of Greg, 46 cf'er, cepacia pretx, tx'd 10-31-05 at Methodist, Indianapolis
www.standinginthegap4greg.org
standinginthegap4greg@hotmail.com
Scarlett81
New member
I've been DX with cepacia for about 12 years-but it hasn't showed in a culture for probably 2-3 years now.
I don't know what that means-I do know that TOBI fights cepacia and Tobramycin IV fights it hard, and I do alot of Tobra IV.
I don't know what that means-I do know that TOBI fights cepacia and Tobramycin IV fights it hard, and I do alot of Tobra IV.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MyNewfy</b></i> Is it true that if
you have Cepacia, then you can't get a transplant? Good luck
Amy.</end quote></div><br>
<br>
I think that having cepacia is a contra-indication for a lung
transplant in the States, but in Canada, they transplant cepacia
patients frequently and the outcomes post transplant are improving
(but still not as good as those without cepacia)<br>
you have Cepacia, then you can't get a transplant? Good luck
Amy.</end quote></div><br>
<br>
I think that having cepacia is a contra-indication for a lung
transplant in the States, but in Canada, they transplant cepacia
patients frequently and the outcomes post transplant are improving
(but still not as good as those without cepacia)<br>
Hi there<br>
<br>
I think you will find that Gladioli is actually one of the types of
Cepacia. From memory there are 9 different Cepacia genomovars, of
which Gladioli is one.<br>
The nastiest is supposed to be Genomovar 3, otherwise known as
ceno-cepacia, i think Gladioli is perhaps Genomovar 9???<br>
I have genomovar 2, which is also known as Multi Vorans.<br>
Now what I am unsure of, is when doctors talk about a patient
having just 'cepacia' are they talking only about genomovar 3, or
are all the other 8 genomovars still called cepacia also, not sure.
I think also the only cepacia which sometimes prohibits you from
lung transplant is genomovar 3.<br>
Dont take this as gospel but perhaps ask you doctor if having
burkholderia gladioli means you still have cepacia. I'd be
interested to know myself, as I consider myself to have cepacia
even though it's not the supposedly nastiest one, however i have
been told that my particular type of cepacia is not a huge issue as
far as cross contamination is concerned, so presumably if i wanted
to, i could still attend conferences etc.<br>
I don't, because whether i have the nastiest variety or not, i
don't want to give it to anybody else. But i'd love to know when a
doctor refers to somebody having 'cepacia' are they only talking
about genomovar 3, or are they referring to all 9 different types.
<br>
I think you will find that Gladioli is actually one of the types of
Cepacia. From memory there are 9 different Cepacia genomovars, of
which Gladioli is one.<br>
The nastiest is supposed to be Genomovar 3, otherwise known as
ceno-cepacia, i think Gladioli is perhaps Genomovar 9???<br>
I have genomovar 2, which is also known as Multi Vorans.<br>
Now what I am unsure of, is when doctors talk about a patient
having just 'cepacia' are they talking only about genomovar 3, or
are all the other 8 genomovars still called cepacia also, not sure.
I think also the only cepacia which sometimes prohibits you from
lung transplant is genomovar 3.<br>
Dont take this as gospel but perhaps ask you doctor if having
burkholderia gladioli means you still have cepacia. I'd be
interested to know myself, as I consider myself to have cepacia
even though it's not the supposedly nastiest one, however i have
been told that my particular type of cepacia is not a huge issue as
far as cross contamination is concerned, so presumably if i wanted
to, i could still attend conferences etc.<br>
I don't, because whether i have the nastiest variety or not, i
don't want to give it to anybody else. But i'd love to know when a
doctor refers to somebody having 'cepacia' are they only talking
about genomovar 3, or are they referring to all 9 different types.
L
luke
Guest
Julie,
Unless they sent your sputum to a specialty lab I would think they just misdiagnosed your bacteria. Many of these crazy bacteria primarily look alike. It takes a well trained eye to tell the difference. I know my clinic always says mine resembles burkholders gladiolli but sends it to 2 labs, one to minnnesota the "leading specialist in the country" and one somewhere else? I actually culture a crazy litlle bug called pandoreum sputurum(sp) it is still resistant but there isn't any studies showing it has a negative prognosis like with some cepacias. So I guess I think it is much more likely for the lab to screw up then it to "morph" into a different bacteria.
Unless they sent your sputum to a specialty lab I would think they just misdiagnosed your bacteria. Many of these crazy bacteria primarily look alike. It takes a well trained eye to tell the difference. I know my clinic always says mine resembles burkholders gladiolli but sends it to 2 labs, one to minnnesota the "leading specialist in the country" and one somewhere else? I actually culture a crazy litlle bug called pandoreum sputurum(sp) it is still resistant but there isn't any studies showing it has a negative prognosis like with some cepacias. So I guess I think it is much more likely for the lab to screw up then it to "morph" into a different bacteria.